Support for PCEHR opt-out from HISA and HIMAA survey

Written by Kate McDonald on 07 July 2015.

The majority of respondents to a survey of industry views on the proposed changes to the PCEHR were in favour of the opt-out model and a name change to My Health Record, but there were significant areas of concern over secondary use of information, privacy and security.

The survey (PDF), organised by the Health Informatics Society of Australia (HISA) and the Health Information Management Association of Australia (HIMAA), was in response to the federal government's discussion paper on proposed changes to the legislation governing the PCEHR and the Healthcare Identifiers (HI) Service.

HISA CEO Louise Schaper said the views of more than 350 respondents to the joint survey provided valuable insights and that the significant changes proposed, many from the Royle review, were generally supported.

However, both Dr Schaper and HIMAA CEO Richard Lawrance urged that health informatics and health information management expertise be included at all levels of governance within the proposed Australian Commission for eHealth (ACeH), which the Royle review recommended should replace NEHTA.

The government announced in the May budget that it wants the new ACeH to take over operational control of the PCEHR from the Department of Health.

The organisations said that the skill sets, knowledge base and experience of health informatics and health information management professionals are critical to the success of eHealth initiatives.

While 77 per cent of respondents agreed with a move to an opt-out participation model, Dr Schaper said there were some interesting comments around whether healthcare provider organisations should continue to opt in or be allowed to opt out.

“A bare majority of respondents (51 per cent) agreed or strongly agreed to healthcare provider organisations and associated operators continuing to participate on an opt-in basis with over 20 per cent being neutral to the proposition,” she said.

“Respondents who disagreed were of the view provider organisations should 'opt-out as well', 'should be same as individual so opt-out only' and 'participation should be mandatory'.

She said there was very strong agreement from over 90 per cent of respondents that the PCEHR rules be expanded to address how a healthcare provider would ensure data quality. A further 85 per cent agreed that security measures be expanded to all PCEHR participants.

There was no disagreement from respondents about the proposition that a test environment be developed and implemented for use by vendors, and there was agreement about the need to encourage secure messaging and other forms of communication by ensuring that healthcare providers can be more easily identified.

In terms of secondary use of data, there was majority agreement of 64 per cent that individuals need to provide direct consent to a researcher (with ethics approval). There are lesser degrees of agreement (under 50 per cent) for "more control over de-identified information" and the ability to "opt-out of de-identified information for research purposes" of 49 per cent and 47 per cent respectively.

The opt-out mechanism for de-identified information also had a high level of disagreement of over 40 per cent. Several comments were that the question was an over-simplification of a complex issue.

On incentivising clinicians to upload documents through alignment with the MBS, 50 per cent agreed but others recommended caution.

In a separate submission, HIMAA wrote to urge the department to ensure that health information managers (HIMs) were involved at all levels of implementation.

Mr Lawrance wrote that the PCEHR needed an adequate classification system that supports searchability of data, and renders this meaningful as information for population health management and research, and for funding infrastructure.

“If the PCEHR is not functional as a health information management system, its impact upon the quality of care improvements expected of eHealth and in curtailing spiralling health care costs to the community will be severely impaired,” he said.

“To ensure success in the integrity of the record for the people of Australia, HIMs will need to be involved at all levels of implementation because integrity will rely on good documentation, right patient right record, privacy, consent, rules around systems and work flow required to get from the referral, preadmission, admission, discharge medication, discharge summary, back to the GP, specialist follow up, allied health follow up.

“Dropping all of these elements into an existing EMR and expanding this to the My Health Record requires the comprehensive combination of HIM competencies.”

Comments

“Mr Lawrance wrote that the PCEHR needed an adequate classification system that supports searchability of data, and renders this meaningful as information for population health management and research, and for funding infrastructure.“If the PCEHR is not functional as a health information management system, its impact upon the quality of care improvements expected of eHealth and in curtailing spiralling health care costs to the community will be severely impaired,” he said.”Richard Lawrance’s statement above is one of the few enlightening ones that have appeared in this eHealth debate over the PCEHR/MyHealth Record. His focus addresses one of the core failings of this expensive project. It DOES NOT capture data directly during the patient care –processes (and never will in its current format(s). The failure to capture standardised, interoperable secure patient data while care is being delivered (even from the patients) will have us all paying for expensive and non-functional (inflationary) eHealth projects.Let us “live and learn” from the wide depth of knowledge and experience which exists around the world on these issues.

Thank you Dr Hannan and Cris Kerr for acknowledging, supporting and encouraging further support to our CEO and the Health Information Managers' profession of a few of the issues surrounding the PCEHR/MyHealth Record system. We are always willing to be a voice in this "chorus".

My primary interest is in the development of a comprehensive national 'public health and medical research' eHealth data framework, as summarised under my profile on ‘The Conversation’.

I'm among those who don't support legislating that consumers/patients be forced to 'opt-out'. To me, that represents forced participation, removal of individual choice, disregards capacity to enact, and is undemocratic.

It's my belief the right framework, well-designed and well-developed for all the right reasons, would attract opt-in participants.

Cris, your input to this discussion is very valuable. On the "opt-in" side of the argument existing research on complex eHealth implementations favours the opt out model for high income and Low and Middle Income Nations. It radically changed the participation rates in Kenya when we went from "opt in" to "opt out". Sadly the perception of "forced" pervades this discussion when that is not the intention (I am not a PCEHR supporter in its existing genre).

Great discussion Cris and Terry. However there is no 'low uptake' of the PCEHR. Current just under 10% of the population are registered - up 100% from 5% just 18 months ago. One would have anticipated a staggering drop off in registration with the hiatus called by the then incoming federal government with the Royle Review late 2013, but they have only dropped from 2,500 per day pre-Royle to between 2,000 & 1,500 per day. Registration is well into Rogers' 2.5%-13.5% Early Adopters and will potentially be into the Early Majority before the year is out, if registrations become up-beat with the budget $485m announcement re-PCEHR ~4 years. In terms of Rogers Diffusion of Innovation model, this is a highly successful initiative. I'm not advocating for or against Opt-in/Opt-out (although HIMAA's official position is in favour of the "opt out" model), but rather pointing out that the myth that PCEHR is underperforming is just that. It's swimming in (sadly mostly scanned) information, and GPs and hospitals are uploading daily. Thanks again, Richard.

Richard, you keep posting these delightful gems such as “or against Opt-in/Opt-out (although HIMAA's official position is in favour of the "opt out" model), but rather pointing out that the myth that PCEHR is underperforming is just that. It's swimming in (sadly mostly scanned) information, and GPs and hospitals are uploading daily”.Irrespective of which innovation model used to measure ‘uptake’ what needs to be asked is “registration a sine que non” measure of “usefulness”? Not all registrations reflect voluntary use as we know many of these registrations have been ‘forced, coerced or administratively driven’ (I stand to be corrected on this having directly seen it occur). For example how does a Nepalese family with no English comprehend why they are being asked/requested/(forced) to register for the PCEHR with all relevant personal ID and banking details?From my “clinical perspective” (clinician/informatician) that latter part of your posting is the most important-“that (the) PCEHR is underperforming is just that. It's swimming in (sadly mostly scanned) information, and GPs and hospitals are uploading daily”. It is NOT and in its current design NEVER meet the needs of an advanced or any other clinical care (eHealth) system.

I have no direct exposure to sign-ups as Terry has, however; I'm sure I'm not the only one who'd be concerned if any sign-up wasn't fully informed (with adequate comprehension) prior to giving consent. What are the policy guidelines for sign-ups (guidelines that ensure fully-informed consent in advance of participation) - what steps are being taken?

Terry made a good point regarding the utility of data captured. It's not about the number of documents uploaded, just as it's not about the number of hospital beds we have.

Beds alone have no value. Beds only have value when professional staff are healing people in those beds.

Similarly, data has no value. Data only has value when it's structured / organised in such a way that it effectively serves meaningful use - in this case, primary use (clinical setting) or secondary use (health and medical research).